Jess Thom says the word “biscuit,” about 16,000 times every day. Her brother-in-law counted once.
That’s just one of the tics that Thom, a London-based performance artist, has to manage as part of her life with Tourette syndrome, a neurological disorder characterized by involuntary vocal or motor tics. Specialists say the condition affects as many as 300,000 children in the United States, though many are undiagnosed.
Thom has had tics since childhood, but wasn’t diagnosed until her 20s.
“What disables me … is other people’s misunderstanding,” she says. “What’s exciting is that it’s something we all have power to change.”
The condition is far more common than many people realize, and many misperceptions about it still exist, says Kevin McNaught, executive vice president of the advocacy group Tourette Association of America.
“It’s not a rare disorder,” McNaught says, citing an estimated 1 in 100 school-age children with the condition, including many who aren’t diagnosed until adulthood, if at all.
Michael Chichioco, a California high school senior who has Tourette syndrome, says he used to be bullied at school, with kids trying to trigger him to have outbursts. His tics come out more prominently when he is nervous or excited.
“People got a kick out of trying to get me to say the bad words,” said Chichioco, now a youth ambassador for the national association. “They would try to get me to say them in bad situations. The big challenge is to remember they don’t quite understand the syndrome.”
Chichioco says self-assurance has been one of his best coping skills.
“It’s easy to get down when people don’t seem to understand it,” he says. Part of his work as youth ambassador, is spreading awareness of the condition and countering the many misunderstandings.
For example, though Chichioco has a vocal tic that leads to involuntary outbursts of curse words, that particular manifestation of Tourette syndrome – coprolalia — is rare. Only about 10 to 15 percent of people with the syndrome have it, says McNaught.
A Neurological Disorder, Not Psychiatric
The symptoms of Tourette’s appear in early childhood but can be transient and reappear later in life, McNaught says. Because symptoms come and go and vary in severity, they often lead to a delayed or incorrect diagnosis until the children are much older.
Tourette syndrome is often misunderstood to be a psychiatric disorder, because it can have some behavioral features and symptoms that worsen at times of stress or anxiety.
Chichioco says he first had tics — “a throat-clearing sound” — at around age 6, but his family and doctors discounted that as perhaps linked to allergies. He wasn’t diagnosed with Tourette syndrome until age 13, after he’d developed more elaborate motor tics that involved his face, head and neck.
Chris Mason, author of the e-books “What Makes Me Tic: Living with Tourette Syndrome” and “Touretties,” says he wasn’t diagnosed until age 20, after his mother became ill. The stress of facing her health issues brought out his tics more prominently, Mason says. His first tics, also motor tics, involved blinking his eyes really fast and tightly.
In his childhood, before his diagnosis, Mason’s parents used to refer to his tics as his “bad habits.”
“A lot of parents have never heard of the word Tourette’s.” Mason says, “even though there’s a hereditary component.”
Though some features of the syndrome seem to cluster in families, the pattern of inheritance isn’t yet clear. “A variety of genetic and environmental factors likely play a role in causing Tourette syndrome,” explains the National Institutes of Health website, with most of these factors still unknown.
The condition is treated with a combination of medication and behavioral therapy. But the medications can carry serious side effects like cognitive dulling or extreme fatigue, so people with Tourette syndrome often come up with other techniques of coping, as well.
Mason, says his medications make him extremely drowsy; he could sleep 18 hours a day if given the chance.
“Any time I sit down or lay down, I go to sleep,” he says. “Being an author, it’s taken away my creativity. It’s hard to write.”
Thom says she couldn’t tolerate those side effects of medication, so developed some other techniques for dealing with her tics. She helps spread the word about her condition — and her coping strategies — on a website called Tourette’s Hero. She wears padded gloves because she punches her chest hundreds of times a day. And she’s begun using a wheelchair because her walking is “chaotic.”
When she started using the wheelchair, Thom says, she noticed a difference in how people treated her: “People are less frightened of me now.”
Thom doesn’t know why the word “biscuit” has such a prominent role in her life. She doesn’t think about biscuits nearly as much as it seems, she says, and laughs. Her experiences inspired the title of a live show based on her experiences — Backstage in Biscuit Land.
She says she decided to perform onstage in a theatrical production because it was the only seat in the theater from which she couldn’t be asked to leave. Having motor and verbal tics makes it highly challenging for someone to attend theater, a space in which people are expected to sit still and quietly, Thom says.
Being in a romantic relationship is another challenge for some people with Tourette syndrome.
Mason compares the situation to disclosing sensitive information in a job interview. “You have to decide if you are going tell someone before you get the job, or right when you get in the relationship,” he says. “When I put it out there, it ends shortly after.”
Chichioco said he hasn’t yet been in a romantic relationship.
“The fear of finding someone you really like, and having them say, ‘You have Tourette’s, I can’t handle it’ — it’s hard to show vulnerability in that context,” Chichioco says. “It’s eventually something I’ll have to face.”
Dating someone else with Tourette syndrome would bring its own challenges, he says.
“When I’m with other people with Tourette, we mirror our tics,” Chichioco says. “That could be a hindrance. At the same time, it would be great to have two people that understand each other.”
Seeing the “flip side” of his challenges — the benefits of having his condition — and talking about those, has been the best medicine for him, Chichioco says. He gave a TEDx youth talk last year about “finding the flip side.”
“I found throughout high school, I was uptight about it,” he says, of Tourette syndrome, but that changed when he started speaking openly about his experience to friends.
“I felt empowered by the backing of people,” the teen says. “The best treatment is being honest and speaking about it.”
Michael Chichioco, Jess Thom and others with Tourette syndrome recently discussed what it’s like living with the condition on KQED’s Forum program. This post, produced by KQED’s State of Health blog, is based on that discussion.